ellen degeneres

What Ellen Made Me Realize About the Politics of the Autism Community

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I love watching “The Ellen DeGeneres Show.” And while there isn’t usually a lot of political talk on the show, lately there has been a bit more. I’m personally not a fan of politics, and so every time the subject comes up on the show, I get a bit nervous.

But the other day, Ellen’s monologue truly opened my eyes. She explained how there are different people in the world, with different opinions. She explained how she doesn’t want to hate someone because she doesn’t agree with their political party or opinion.

And that’s when I realized the autism community is just like politics. Many people judge each other based solely on the organization they support, or their opinion on what causes autism, and so many other topics. Instead of seeing individuals, many people see sides. And that’s when you can start to see the political parties of the autism community.

The problem with this is, for many people, the moment they find out what someone’s opinion is, assumptions are made about the rest of the person. You don’t like a certain organization, so you must be against anyone who does like it. Or maybe you believe in a certain type of therapy I don’t like, so I assume you obviously don’t know what’s best for the person receiving it.

As Ellen mentioned in her monologue, this kind of automatic assumption, “…is not fair. It’s how stereotypes and labels are formed.”

What if those assumptions we make aren’t really true? Imagine all of the people we would miss out on getting to know if we simply based our decision on them on their opinion of one topic.

Perhaps everyone can’t agree on the same ideas. Maybe our opinions are different from another person’s. But we shouldn’t let that stop us from getting to know each other. We don’t all have to have the same opinions. We are allowed to disagree on some things, while coming together on at least one commonality. Because don’t we all just want what we think is best for our friends or loved ones on the spectrum?

The Mighty is asking the following: Describe a scene or line from a movie, show, or song that’s stuck with you through your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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The Walk in the Woods That Helps Calm My Son With Autism and ADHD

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It’s a hot and sticky summer afternoon. My younger son is napping and my older son, W, is on the loose — tired, defiant and bouncing back and forth from one activity to the next. He got stung earlier this morning while walking barefoot through a field of blooming clover, adding now to his crankiness. He needs to get out of the house. Now. We both do.

“I’ll take him to Discovery Park,” I tell my husband, who nods his head in agreement.

There’s a trail there he loves. No matter his mood, when we start walking through those trees, he calms down. Instantaneously. Like he’s been scooped up into the arms of his guardian angel. She rocks him and hums an unearthly tune close in his ear, with skills of calm and soothing I will never possess. I inhale deeply, intensely grateful for the comfort and reassurance this place gives my son. And then I sigh heavily, even more intensely aware of how often I fail at that very thing. He doesn’t mention the bee sting again but trots on. And on and on, pausing only to ask which way we should go when the trail forks.

W has always been one of those “quirky kids.” Barely 2 years old, he could count past 100 and memorize the entirety of Ernest Thayer’s 1888 baseball poem “Casey at the Bat” with ease. Shortly thereafter, sitting in his highchair, cheeks smeared with spaghetti sauce, he’d tell bemused visitors the difference between an octagon, a trapezoid and a rhombus.

His chattiness and our “first-time parentness” meant he wasn’t diagnosed with autism until his 4th birthday. A year or so later, he would also be diagnosed with ADHD. In retrospect, I’m surprised this didn’t come first; the behavioral checklist for kids with ADHD reads like a table of contents for the book of our boy. W never stops moving. He gets up from the table easily 10, 15, 20 times during dinner. His beatific smile hastens the sunrise, but his temper — which his father reminds me he inherited quite honestly — is easily ignited and burns hot. So confinement, bee stings and the dog days of summer do not a peaceful afternoon make. For any kid.

W and I climb out of the car near the trailhead. Hardly a soul can be found in this part of the woods, even during sunny summer afternoons. Most people in Seattle flock to Discovery Park for the bluffs and glorious, sweeping vistas of Puget Sound. The enormous meadows and wide open sky. Not us. Our quiet path is lined with decaying nurse logs, native berry bushes and licorice ferns. Towering maple, yew and cedar trees filter the sunlight into a cheerful yellow and green checkerboard.

A series of ponds sit just off the main trail, fed by small streams we cross over numerous times along the way. The largest one is oddly and delightfully green, completely covered with the tiny remnants of giant flowering alder trees overhead. It is quiet and undisturbed, and we stop so he can throw rocks into the water. Each stone makes a satisfying plop and briefly breaks through the bright green skin to show ripples of darkness beneath.

There’s a little wooden footbridge over the stream, and soon W busies himself collecting fallen leaves, dropping them upstream off the bridge and then trotting around downstream to watch them bump and float into the pond.

Suddenly, a great blue heron flaps loudly down from the sky, all wings and honking in an ornery manner. It startles us both, and W shouts and covers his ears for a moment. But when the large bird settles in quietly to keep vigil in the branches overhead, W too settles back down.

He putters. He collects. He looks up at the sky dreamily for long moments. He quietly sings bits of songs to himself. He throws more rocks and floats more leaves. And it goes on and on, quietly and peacefully in a way it almost never goes on anywhere with walls, doors or a roof. Two or three times he stops, walks over to where I sit watching him, takes hold of both my arms and looks up at me silently.

“Hi, buddy.”

He just smiles. That smile of his. Its radiance makes flowers bloom and clouds flee the skies. I always have to catch my breath.

After an hour or so, he steps too far into the water and his left shoe gets soaked and muddy. With a wail of dismay, the green and yellow spell is broken. It’s time to go home for dinner anyway. He takes off his shoes and socks, and I’ll have to tote him back to the car. It’s OK. He’s 6 years old, but I can still carry him easily with one arm perched on my hip. It seems as though the heron might weigh more than W does, but he, too, is built like a bird. Perhaps he belongs more to their species than to mine. To flight and the feeling of motion and the wind on his face. He belongs more to the trees and the sun and the sky than to me. And if he put his extraordinary mind to the task, he could learn how to fly. I believe he could. And it wouldn’t be my place to call him back down to the ground.

On our way back up the trail, we stumble upon a blackberry patch. W loves blackberries. Like the quiet green pond, it seems this spot is also largely undiscovered. We stop, I push through the thorny tangles and he eats his fill. Then he climbs onto my back and we continue up the hill. The bee sting is still forgotten. I carry him mostly in silence until the next, “Which way should we go, Mama? Right or left?”

I don’t much care either way, my beautiful boy. Just so long as we take the path that keeps us in these woods forever, with the heron, the remarkably green pond, the blackberries and your guardian angel.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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How 'Rocket Laces' Helped My Son with Autism Tie His Shoes

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After 10 years of trying, my son learned to tie his shoes with ease.

My 14-year-old son was diagnosed with autism at the age of 5, and learning self-help skills has been a challenge. His fine motor control is limited, but through much hard work with my husband, his therapists and myself he has grasped some skills. He can zip up his jacket — despite being irritated by the feeling of the zipper touching his chin when fully zipped. He learned to brush his teeth with little guidance, and can independently fasten some larger buttons. But despite all of our efforts and his will to learn, he couldn’t tie his shoes.

He understood the steps, and with hand-over-hand prompting he was able to occasionally complete some of the steps, but the floppiness of the shoelaces made it difficult. He would always choose shoes that had laces, but I would have to double knot them before sending him to school, and even then he would still come home with untied shoelaces.

Peter learning to tie his shoes
Peter learning to tie his shoes

When he was 13, early in the school year he began wearing his Crocs to school. I suspected that it was due to him not being able to tie his shoes, and worried he had been teased for not being able to tie his untied sneakers. I didn’t want him to feel different than his peers at school, so I never got him Velcro straps. I always let him wear whatever shoes he wanted, and for the first time he began choosing his slip-ons over the sneakers he had always loved.

One day, a friend whose child is also on the spectrum asked if my son still needed help with his shoelaces. She had read an article here on The Mighty about “Rocket Laces” and how they were a brilliantly designed shoelace created to teach kids how to easily tie their shoes. The best part of the laces was that they weren’t an alternative to shoelaces. Instead, they are regular shoelaces with a wire-like stiffness, which allows the learner to accomplish every step without the frustration of having to hold floppy shoelaces. I was anxious to try them. I ordered them at SprinkCreative.com.

The day they arrived in the mail, I couldn’t wait for my son to get home from school. By the time he got home, I had already laced a pair of basketball shoes that he would only wear when someone was around to help him. I sat at the table and went over the steps, one at a time, loop-de-loop, over and under. On about his 6th attempt, he was so amazed with himself. I couldn’t hold back tears of joy as he slipped into both shoes and tied them over and over again. From now on, with Rocket Laces he will be able to wear any shoe he wants to school without worry. I hope Rocket Laces can give every child with fine motor challenges the opportunity to wear any shoes they desire.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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Why I No Longer Feel Guilty That ‘Bribery’ Is One of My Parenting Tools

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When I became a mom, I had a pretty hefty bag of parenting tools at my disposal. But over time, the needs that come with my son’s autism made me throw out most of my “tools.”

There was one tool that worked pretty consistently…but I didn’t like to use it.

The tool? Bribery.

It’s the ol’ “If you finish your broccoli you can have a cookie” song and dance.

It worked. But I found myself cringing every time I bribed my son towards the behavior I desired from him.

I wanted him to follow my instructions.

I wanted him to eat his green beans for the sake of his health.

I wanted him to sit through a church to learn more about God.

I pulled back on the bribes, trying to explain the intrinsic value of why we should or should not do certain things. But that didn’t work either.

I expressed my frustration at one of my son Benji’s therapy appointments.

“I don’t want to bribe him to do the things he should be doing already. I mean, he’s part of the family. He should clean up his room.”

“That’s true,” our therapist nodded. “But, call it what you will — bribing, incentives — we all are motivated by something. Even if you love your job, people ultimately go to work for the paycheck. Money is a huge motivator to get up and be responsible each morning.”

I paused, listening to her reasoning.

“Eventually,” she went on, “we want Benji to get in the habit of doing the right thing, incentive or not. But utilizing incentives for a desired outcome isn’t wrong. It can be a very good thing.”

“So you’re telling me it’s OK to bribe my kid?”

We both laughed.

And I relaxed a bit.

Bribing — incentives — (whatever) works for us.

In fact, it has been the best tool in my bag for motivating Benji towards good behavior and fewer meltdowns.

Now that he’s 8, I don’t have to promise a cookie for him to eat his vegetables. He knows that eating his veggies is part of dinner.

But in other things, an incentive — small or large — sparks his interest; it motivates and excites him. In many cases, it’s the difference between Stuck and Moving Forward.

I don’t apply incentives to everything. Sometimes I throw down the “because you’re part of this family” card or remind him that kindness and being friendly is its own reward.

But for our cyclical struggles, like church, the incentive has become a reliable tool.

Benji knows if he sits quietly with us during the service and participates in Sunday School, he can watch Pokemon on Netflix that afternoon. He loves Pokemon and looks forward to it each week (in fact, he’s started calling Sunday “Pokemon Day”).

Sure, I’d like him to sit still, participate in the service and be an attentive listener in Sunday School because he wants to learn about God and please his parents, teachers and friends.

Pokemon book next to a toy truck

But they are abstract rewards, even if he understands or even wants those things. He struggles with the abstract, so giving him the concrete reward of Pokemon is the incentive that helps remind him of how we believe he should act and wants to act.

The Pokemon incentive is immediate gratification. But we’re trying to inspire him to work towards a goal with delayed gratification, too.

Right now, he is doing chores to get a new toy. I made a chart to track his progress. For each chore he earns 25 cents; 40 chores will get him to his goal. He’s pretty excited to mark the dots on his chart so he can visually see his progress.

Am I bribing my kid to do housework? Eh, maybe.

Bribing? Incentives? Working towards a goal? We’ve all been there as parents and as individuals. After all, as adults, we “bribe” or remind ourselves of the incentives of XYZ all day long to help motivate us towards our goals.

I try not to abuse the “bribe.” He doesn’t get to eat a lollypop or play on the iPad for every dot and tittle of good behavior. But incentives are part of the real world, so I’m planting that tool firmly in my parenting bag and am throwing out the guilt of “bribing” my kid with what motivates him.

After all, my therapist said it was OK.

Follow this journey on The Bam Blog.

Lead photo source: Thinkstock Images

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Mom 'Lets' Child Escape Into Gorilla Enclosure: I Am That Mom

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I am a mom. I am that mom.

I have four kids just a few years apart, and my oldest is on the autism spectrum. I have managed to lose each of them at different times for varying amounts of time.

When we lived in the city my son, a ball of pent up energy, would race ahead of me on his scooter while I ran to catch up, pushing his sister in her stroller, screaming for him to slow down, to wait for me, to stay within, if not my reach, at least my sight.

I’d hold my breath when he turned the corner for his preschool and the few moments I could not see him. Should he have been abducted in the time it took me to turn the corner, it would have been my fault.

My oldest, my daughter, who’s on the spectrum, tends to wander. She is distracted and
fascinated by escalators, books and animals. She would have wanted to touch and hug a live gorilla.

I have lost her in the city. I have lost her in the country. I have lost her in my own home.  It was never my intention to lose her. I lost my mind every time I did. During a family gathering when I thought she was upstairs reading, a friend found her sitting in the middle of the road in front of our house. Had something happened to her in any of those locations, it would have been my fault.

The level of venom and vitriol unleashed at this woman, at this mom, blows my mind. I wonder if her critics realize she did not arrive at the zoo that morning, a bevy of kids
in tow, with the intent to kill. Have they somehow mistaken her for someone on safari tracking, shooting and posing with the carcasses of an endangered species? Don’t they understand she was trying to occupy her kids for a few hours on a long weekend?

I wonder if her critics have ever tried to corral a group of young children. I wonder if they know that often they move in opposite directions or simultaneously drop their ice
cream and need their shoes tied. I wonder if they know that sometimes kids don’t listen, sometimes they whine and cry and fight and distract you from yourself.

I wonder if they know that sometimes they shake loose and run away further than you can see. I wonder if they know the terror that strikes when they are out of sight.

I wonder if her critics have ever loved someone who cannot care for themselves – someone whose safety and life depends on you. I wonder if they know what it feels like to lose someone you love.

And I wonder what they would sanction to get that person back.

The Mighty is asking the following: Describe a moment where you experienced intolerance or inaccessibility. What needs to happen to change this? Check out our Submit a Story page for more about our submission guidelines.

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The Kid in Harambe's Habitat Could Have Been My Autistic Brother

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John Bonilla
My brother John

By now, you’ve heard about the controversial and tragic death of Harambe, the endangered Western Lowland Silverback Gorilla at the Cincinnati Zoo. The internet has gone ablaze about who should be at fault for Harambe’s death. People are passionately divided. Opinions vary from backing up the Cincinnati Zoo’s decision to charging the zoo and the mother of the young boy with criminal negligence. Some have gone as far to say that if the child would have died at Harambe’s hand, he would have deserved it for wandering in there.

When I first saw the footage, I felt sick to my stomach. Being the primary caregiver of John, my autistic brother, I understand how easy it is for a young child to slip away. I am in no way condoning the mother’s actions, or lack of actions, depending on your views.  But, I do understand how in a second everything can change from calm to life-threatening. John slipping away happened to us, more than once.

Autistic children are at risk of eloping or wandering. If they are in a situation causing them to have a sensory overload, if they’re scared or if they’re fixated on a particular person, animal, object, sound, and/or smell, they might walk/run off. Wandering was a constant challenge for us, especially in John’s younger years. When John was the same age as the boy at the Cincinnati Zoo, our family went to The San Diego Wild Animal Park. While on the tram ride, which goes around the main animal preserve, John tried to jump out. He wanted to pet the animals.  Since there were no seat belts on that tram, Dad had to hold John on his lap to keep him safe. I could only imagine how terrifying it would have been if John was able to get down to the animals.

I remember the looks on the faces of our fellow tram patrons as dad was holding John.  John was having a meltdown. Since these patrons were with their children, you would think they would have been empathetic. But sadly, this was not the case. I heard some of them whispering, accusing Mom and Dad of being “bad parents and John of being a “spoiled child.” Even if Mom and Dad had explained John’s autism, I don’t think it would have helped them. The judgmental patrons would have probably have stuck up their noses.

As the wandering continued, our parents decided to put John in a leashed child harness while in public. This made going out more difficult. John despised the harness. Then, John figured out how to get out of the harness. We spent most of our time at home and had to take extra security measures to protect John. This included adding higher deadbolts to our doors, installing a television surveillance system, getting a car with child locks and registering John with the local police department as a potential wanderer.

For the next few years, our family took extra precautions. John had a constant chaperone who would always hold his hand in public. By third grade, John developed more speech and went to an elementary school, where the security and teachers took extras measure to make sure he didn’t wander. John’s wandering decreased, but he still wanders to this day.

Recently, John and I were walking to the bus stop. Afraid we were going to miss the bus, John tried to run across a crosswalk with the red light facing us. It was difficult to hold him back from oncoming traffic. As John’s caregiver, it is my responsibility to make sure he is safe.

When we are outside of a situation, it’s so easy for us to stick our noses up and say, “I would never do that, ” or, “That would never happen to me. I’m a responsible parent.”  Yet, at a moment’s notice, things can change dramatically.

For resources on autism-related wandering, head here.

The Mighty is asking the following: Describe a moment where you experienced intolerance or inaccessibility. What needs to happen to change this? Check out our Submit a Story page for more about our submission guidelines.

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